4 Weeks Post-Op

I haven't posted anything in a while for a number of reasons. I have been battling some strong flare-ups of fibromyalgia, which I knew I might experience after surgery. It didn't hit right away. As with my car accident in May, it took a while for the fibromyalgia to kick in, but kick in it did.

Fibromyalgia is a strange syndrome, and I'm still not completely convinced that's what I have. But the flare-ups come on in a subtle wave of symptoms, beginning with a weird tingling in my upper front teeth. That's followed by a tightening in my joints that over the two days that a flare up usually lasts, builds to an almost unbearable aching in my elbows, knees and hips, with some stiffness in my hands. I've been told that fibromyalgia doesn't affect the joints at all; it's the pulling of the muscles that causes the joints to ache. When this all began, after another hip surgery in early 2005, I used to have terrible sleep problems, waking up every hour and feeling an uncontrollable urge to stretch, especially in my legs. But I was eventually sent to a rheumatologist who confirmed my diagnosis and started in with medication. Two anti-depressants -- Trazadone for sleep and Cymbalta for pain. And the FDA favorite, Lyrica, also for pain. These actually seem to get the Fibro symptoms under control, until something traumatic or stressful comes along (car accidents, surgery...) and then it seems to take a while to stabilize. After my car accident, my dosages of Lyrica and Cymbalta were increased, which eventually helped quell the symptoms.

I don't think there's much higher to go on the dosages of these, so I'm hoping that by resting a lot and not pushing myself the way I used to will help get this under control. Today is the first good day I've had since the attacks began. Sleep seems to be the best antidote, so I've been liberal with that.

I begin performing again this Friday with Telesma in Annapolis and then at a benefit for the Senator Theater in Baltimore on Sunday. These will be late nights of being on my feet and singing for hours, so it will surely test my stamina.

As far as recovery from the hip surgery on January 12, I'm doing pretty well. I'm still walking with the aid of one crutch until I'm given the go ahead to walk crutchless on February 19 by Dr. Mont. It hurts to walk, but I'm told I should do it anyway. Today was my biggest outing yet -- walking all around the townhouse community where I live. It's been beautiful outside, which really helps.

I've been doing well on the stairs, though everything is still slow-going. I've been doing more bending over than I should, but the physical therapist told me if I have to bend over, to extend my leg out behind me, so as not to break the "90 degree rule". It's just impossible to load or unload a dishwasher, put something in the oven, change the cat's water and food, put something in the dryer -- all the normal stuff of life that involves bending over. So far I have not dislocated my hip, so I consider what I'm doing to be acceptable.

I've started teaching voice again, and except for the fact that I can't do the stretches I usually do with my students, things have been going well. I get tired easily, so I'm not completely back yet, but every day I get closer to being myself again.

Last Day Before Surgery!

It's the last day I can bathe, wash my hair, reach my toes and have a hip that's not made out of metal and a smooth, scarless hip.

This pre-op period has been so difficult, wrought with sickness and discomfort. I have had so much to do, but have been able to do very little. I finally felt a lot better yesterday, but of course, used that renewed energy to go out and get some things done before I'll be unable to drive for two weeks. Stupid things like buying new eyeliner because my old one is almost out. I got gas even though my car will be sitting around for at least two weeks. I just don't want to have to deal with buying gas in the cold of winter on crutches! I tried to get my prescriptions filled, bought last minute things to take to eat at Adrian's, etc.

The end result was that I walked a lot and I haven't been able to do that in quite some time. Predictably, today I'm in a lot of pain. Took my last epsom salts bath. It's a fibromyalgia flare-up, which I haven't had in a while. Maybe I'm getting all these things out of the way before the surgery. Fibromyalgia is what my friend Bruckie would call "wavular". It comes and goes, flaring up and then subsiding. I am afraid of the effects of surgery on the fibromyalgia. It was after my last surgery that I developed the strange and painful symptoms that were eventually labled "fibromyalgia". Some people experience powerful flare-ups after surgery. My only hope is pain meds, the breathing I've learned from Joe Panella, mantra meditation and the good care I'm sure I'll have in the hospital, and especially when I get back to Adrian's.

Some History

There's a backstory to my hip resurfacing surgery that I thought I'd tell, while I'm laid up nursing the relapse to my head cold, a fibromyalgia flare-up and my poor aching hip and back. (Thank God for laptops.)

I was always a powerhouse of energy and productivity and never even gave it a passing thought. My health was excellent for years! I had three very active children, started a graphic design business in 1992, wrote and recorded 2 CDs, performed several times a month in two separate bands -- often out of town, hosted and managed a benefit concert series in Baltimore. People would often say to me, "I don't know how you do it!" I don't know how I did it either, but apparently it was taking its toll.

In September 2004, it all came to a halt. I had painted all day with two artist friends of mine, and then went on to a rehearsal with Telesma, the off-beat psychedelic, tribal, world dance music band in which I'm the lead singer. I couldn't stand up and trouble finding the energy to sing. A few days later, I took one step down to go outside in my backyard and felt the most incredible, unfamiliar sharp pain in my groin. It went away quickly enough, but I experienced it a few more times and wondered if I had dislocated my hip or something. 

I went to my primary care doctor (Jyothi Rao of Columbia, MD) who was sharp enough to suspect avascular necrosis. She ordered an xray, which was normal, and then an MRI, which confirmed her suspicions. I had never heard of avascular necrosis (AVN). Sometimes called a "heart attack of the hip", apparently there was a one-time "event" where a blood clot formed in a blood vessel in my hip, cutting off the blood supply to the femoral head. Without its nourishment, the top portion of the femur died, leaving soft spongy tissue instead of hard bone. Eventually the cartilage disintegrates, the the joint becomes arthritic. The pain comes from bone hitting on bone, and apparently bone has many nerve endings in it. If left untreated, the hip would eventually "collapse". I didn't know what that meant but it didn't sound pleasant. I was put on crutches immediately to prevent any imminent collapse. I was referred to orthopedic surgeon Dr. Michael Mont of Sinai Hospital in Baltimore, one of the top experts in the country on AVN and joint replacement. Mont confirmed the AVN and suggested we do a core decompression surgery, where he would drill a small hole into the femoral head, to try to stimulate new bone growth. Mont told me he had a very high success rate with this surgery in patients with early stages of AVN like mine.

I had the surgery in January 2005 but it didn't help my pain level much. In fact, it was after the surgery, as I was convalescing, I began to experience strange symptoms that would eventually develop into mysterious and powerful bouts of pain, fatigue and weakness.

It began with a strange "electric" feeling in my front teeth. It was painful and constant. Then I would feel an incredible tightness and intense pain in my knees, hips and elbows. At my lowest point, I could barely bring food to my mouth to feed myself. I went to lots of doctors at this point. For a while it was thought that I had Lyme disease, and I sought treatment with Dr. Ross Stark, an eccentric but effective doctor of acupuncture in Annapolis. It was through him that I learned the "Secret to Happiness" (for me) -- epsom salts baths. I haven't been to him in years, but I am still a faithful epsom salts bather. 4 cups of epsom salts in a warm bath for 20 minutes. Sometimes this was the only thing that would help. Stark claimed that it was the cheapest and most effective way to detox. He was certain I had Lyme disease and treated me for that for about a year.

I did get much better by working with him, but not completely. I stopped working with him (and tried several other acupuncturists) and ended up being sent to a Rheumatologist and was prescribed medications (Lyrica, Cymbalta, Trazadone) to deal with my new diagnosis: FIBROMYALGIA. I don't believe in this "syndrome" exactly, and have read medical articles that connect Lyme to Fibro, and blood disorders like mine to auto-immune diseases and fibromyalgia in particular. So who knows? Oh, did I forget to mention that in the course of treatment for AVN, it was discovered that I have 2 genetic mutations that result in my body having a difficult time breaking up blood clots that form in my body. So the cause of my "idiopathic" AVN was actually a blood coagulation disorder I didn't know I had.

By the spring of 2006, I developed a strange and constant pain in the middle of the left side of my back. It became so painful and nagging that I tried to figure out what it was and FIX it. Though CT scans, MRIs, Xrays, etc. showed no reason for pain, no one was sure if the pain was caused by the unresolved AVN in my hip. I sought treatment through acupuncture, naturopathy, massage, reiki and anything else I could, but nothing helped and I was expending loads of cash and energy. I turned to pain management that included trigger point injections, epidural injections, cortisone shots to no avail. I was put on opioids, which have saved me from agony, but of course I didn't want to live the rest of my life on them.

Finally my pain management doctor admitted to me that the back pain was probably connected to my avascular necrosis after all. I left there, called and made an appointment with Dr. Mont, and even scheduled a surgery date, knowing it was time to do some kind of surgery.

7 days pre-op

Well, I've developed a cold. My hospital instructions say if you develop any kind of sickness (i.e., a cold) 1 - 2 weeks before surgery, to call them immediately to reschedule your surgery. Instead, I went out and bought homeopathic medicine, chicken soup and ginger root to ambush this cold before it gets bad. So far so good. I also took an epsom salts bath -- which has been a life-saver ever since Ross Stark, a kind of eccentric acupuncturist in Annapolis, told me about it. Soaking for at least 20 minutes in a warm bath with about 4 cups (half of one of those big cartons) of epsom salts in it helps with my hip pain and does wonders for my fibromyalgia pain.

I looked online and found that a lot of other people have had this kind of bad luck -- getting sick so close to surgery. I'm very attached to keeping my surgery date as Monday because my work and performance schedule depends on it. I had no fever when they took my temperature at the rheumatologist's today. I'm hoping to get some good sleep tonight. Please let me be well!

8 days pre-op

I wanted to begin this blog before my hip resurfacing surgery on January 12 to share my experiences with fellow hip resurfacing patients as well as have a record of my feelings and experiences for my own benefit, and to share what I'm going through with friends and family.

With a week to go, there is a lot of preparation. I feel excited about the surgery and the prospect of being able to walk, dance and move again! I'm also a little nervous. I've been reading about other people's experiences, and have done a lot of research about hip resurfacing vs. total hip replacement, what to expect post-op, etc. 

I went to see my orthopedic surgeon, Dr. Michael Mont, recently because I had come to the end of my rope with hip and back pain, and my pain management doctor (Dr. Abdul Soudan) finally admitted, after seeing me for over two years, that he thought my back pain was caused by my arthritic hip. Mont had discouraged me from doing hip resurfacing last spring. He instead suggested we do another core decompression surgery (with scope this time), as we had done in January 2005 to no avail. I almost went for it, but because of my teaching and performance schedules, I opted to wait until this winter and see if I was still in as much pain. 

I had a car accident in May 2008, and though not seriously hurt, what I did suffer from was all on my left side, which is the side of my body that suffers most from the avascular necrosis of my left hip. My ribs were jammed into my spine and I went through extensive physical therapy (until my PIP money ran out), though it never really helped. Ever since the spring of 2006, I have experienced severe back pain on the mid-left side of my back. I had all kinds of diagnostic tests, which showed no cause for the pain. The accident exacerbated the back pain terribly. I also had a huge resurgence of my fibromyalgia, something I seemed to develop after my core decompression surgery (2005).

By the time my teaching session at the Chesapeake Arts Center ended in December, I was in tremendous pain. I had a few more performances I had lined up, and then a break until February, when both teaching and performing had to start up again. If I was going to have surgery, this would have to be the time.

I went to Dr. Mont on Dec. 19, and had already requested a January surgery date. I knew we were going to end up doing something surgically, but I really didn't think Dr. Mont would allow me to have the hip resurfacing. After looking at my xrays, there was no question that my hip had deteriorated quite a bit compared to the last xray (Spring 2008) and was quite arthritic. He gave me the facts on hip resurfacing and total hip replacement and asked me to make the choice, though he clearly favored the resurfacing. I liked the idea that my femur would be kept intact, and just the head would be removed and replaced.

There's much to do in the next week -- get the kitten spayed, give voice lessons for students who want to have at least one more lesson before I'm "laid up", graphics work that needs to get finished up, blood tests to be done, hair washed (and colored? -- no showers for up to 2 weeks post-op!). And I want to spend as much time as possible with my kids, especially my youngest: 12 year old Dylan.